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New report highlights need for better end-of-life care

When people come to her to die, Anne-Marie Dean wants to cloak them in comfort and usher them out with gentle care.

Anne-Marie Dean, executive director of Hill House Hospice in Richmond Hill, stands on Saturday at the entrance of a room where a daughter is spending time with her dying mother. (Vince Talotta / Toronto Star)

That’s her job at the Hill House Hospice in Richmond Hill. But as highlighted in a new report on dying in Ontario, only 30 per cent of people with chronic illnesses in the province get to die with such end-of-life care. Far too many pass away in emergency wards or intensive care units, where a good death isn’t always the emphasis, Dean said.

“We find what people want is to have their stuff around, and they want their loved ones,” she said.

“When they die in emergency (wards), there are bells and whistles around them, and there’s no privacy ... That’s when they lose their dignity.”

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Published Monday, the report from Health Quality Ontario aims to give the government a framework to improve end-of-life care in the province.

The report’s authors reviewed evidence on best practices and came up with a slew of recommendations, such as having conversations about death with patients earlier in their treatment, training health practitioners to be more familiar with end-of-life care, providing better support for informal caregivers and offering more palliative care at home instead of in the hospital.

“A lot of them strike most people as being common sense ... I don’t believe there is a single solution and that’s why this report is so comprehensive,” said Irfan Dhalla, a doctor with HQO involved in compiling the project.

“I think we are all hoping over the coming months we will work together to improve care for people who are near the end of their lives.”

The report comes on the heels of an analysis of palliative care in Ontario that was released last week by the province’s auditor general. As it stands now, there are fewer than two hospice beds per 100,000 people in Ontario, well short of the recognized standard of seven per 100,000, according to the auditor general.

The auditor general estimated Ontario needs between 484 and 809 new hospice beds to meet demand. The province currently has 271.

The analysis also pointed out that palliative care beds in hospitals cost between $630 and $770 per day, while acute care beds cost more than $1,100 per day. Hospice beds are even cheaper, according to the auditor general.

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Shirlee Sharkey, co-chair of HQO’s end-of-life expert panel, said these issues are becoming starker as baby boomers get older. By 2036, the number of Ontarians over 65 is expect to double to 4 million, representing roughly one quarter of the population, according to the attorney general.

“We’re looking at more death,” said Sharkey. “Just sheer numbers is one of the key reasons for this.”

One of the most important recommendations in the report, Sharkey said, is to ensure people discuss the type of death they want with their doctors, so when the time comes they’re familiar with their options, whether that is to die at home, in a hospice or a hospital palliative care ward.

“Most people are reluctant to have that conversation,” she said. “The critical issue here is de-medicalizing, or demystifying, death and begging to have a more open conversation.”

Dhalla agreed and added having palliative care experts such as spiritual advisers, personal support workers and doctors available more widely in teams and for home visits is equally vital.

“Most people who are nearing the end of their life will express a wish that they want to die at home, yet most people in Ontario die in acute care at a hospital,” he said, adding that it’s more expensive to have patients die in hospital than at hospices or in their own homes.

“If you can provide care that is more in keeping with the patient’s wishes, and it’s cheaper, then that’s what we should be doing,” he said.

As executive director of the Hill House Hospice, Dean hopes the government will invest in end-of-life care, first by opening up more spots in facilities like hers, or on palliative care wards. Hill House has three beds, the only ones in York Region, she said.

“It’s all about comfort and it’s all about helping people live until the moment they die ... Everybody deserves to have access to that.”

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